My first visit with the gastroenterologist

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So, you may know that I have been having poopy issues.  Severe pain when going Number Two, cramping, constipation, diarrhea, etc.  Want more info?  Read here.

Anyway, two months after my initial consult with my PCP I finally saw the gastroenterologist today (the appointment process took that long…).  Went in not knowing what to expect…

But we just sat and talked for about 30 minutes.  We discussed my medical history, my Endometriosis, my diet change, supplements, my poopy symptoms, etc.  He is very familiar with Endometriosis.  We threw around Irritable Bowel Syndrome, Crohn’s Disease, and Ulcerative Colitis.  We talked about each, compared them to my symptoms, and even discussed what I do now to keep my symptoms “under control,”  as well as what the medical community could offer me for symptom control (which was prescription-strength identical to what I do now : laxatives, anti-diarrhea medication, cramping medication).

He doesn’t believe my symptoms are Crohn’s or UC. He agrees they’re not normal, which made me feel good.  We also discussed my pelvic MRI from 2014 before my Endo surgery.  There were no abnormal findings as far as my gut went, which is good.  So, he feels my symptoms may be Endometriosis-related, especially since implants were found to have obliterated my cul-de-sac and I have a lot of cramping on the right side : two very high indicators of Endo on the bowel.  And the fact that these symptoms had disappeared for nearly a year, but recently returned may be an indicator of Endo’s return and adhesions.  But it also may be a little bit of IBS, especially because stress appears to be a trigger.

But with that being said : how do you confirm Endo on the bowel?  Surgery, of course.  We both agreed that I didn’t need to be cut open to verify or discredit Endo on my bowels; not just yet (if my Endometriosis pain were existent; however, that’d be a different story).  Especially because my poopy symptoms are something I’ve dealt with for a while and they don’t seem to worsen…it’s just a part of life.  I mentioned how sometimes the pain is so severe you cry on the toilet, but those are few and far between.  So for now …

The game plan:

  • If symptoms worsen or I can’t bear it anymore, head on in for a colonoscopy.  It won’t spot any Endometriosis inside my colon, but it would rule out other problems inside the colon.  Peace of mind procedure.
  • If symptoms are horrible and unbearable, I’ll have an MRI to look at my guts.  Depending on those results, talk about scheduling an exploratory surgery to examine the bowels.
  • If my Endometriosis gets to the point where I need to go in for another excision surgery, make sure to coordinate with the surgeon to examine the bowels (and possibly have a bowel surgeon on hand).
  • If I find blood in my poop, or suddenly begin to lose weight, go back for a consult and testing.
  • He gave me the name of a colorectal surgeon in case I wanted to schedule an HPV test of my rectum.  It has been found on my cervix in the past, and this is just a preventative test to make sure the cells aren’t in my butt, too.  I’ll reach out for the referral from my PCP.

I must say that even though we didn’t do anything but talk at today’s appointment, I feel like it was incredibly productive.  Just being able to sit with the doctor, discuss symptoms, my concerns, the things I didn’t want just yet, etc…it was nice.  And to outline a game plan, as well as know I could go back at any time to have a procedure with this doctor : peace of mind, yet again, is a marvelous thing.

So as he put it, for now I’ll ride this out.  And I’m okay with this plan.  For now.

Yours, Lisa

Silent Endometriosis

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There are many usual signs and symptoms of Endometriosis.  If you suffer from this disease, you know them all too well.  If you’ve not heard of them, please read about them here.  One of our readers, Tanya, let us know that she suffers from “Silent Endometriosis.”  What’s that?  She has an official Endometriosis diagnosis, but only some of the symptoms associated with Endometriosis.  Some women with Silent Endo don’t have any Endo symptoms (this is known as asymptomatic Endometriosis). Does that make her any less of an Endo sufferer? No, not at all.  She suffers from the same invasive disease as the rest of us.  Just in a different way.

A whole slew of questions were raised, which we’ll look into:
  1. Why do some women present with classic symptoms like crippling pain and some don’t?
  2. And, given that silent endometriosis exists, this makes me wonder if the overall incidents of endometriosis is higher than is usually quoted. How many women have this and have no idea?
  3. Since the symptoms don’t present as normal in silent endometriosis, what are some of the other signs that women possibly facing this condition can look out for?
  4. Why do some women who are riddled with endometriosis have no pain, and others with very little endometriosis have excruciating pain?

Let the research begin!

Symptoms of Silent Endometriosis

Dr. Jeffrey Braverman wrote in October 2013 about his surprise at how many women facing problems with fertility go undiagnosed with Endometriosis, simply because they do not have pelvic or period pain.  A red flat for Silent Endo may be a prior history of miscarriages or failed IVF attempts.  He says many women with Silent Endometriosis suffer from unexplained elevated FSH (follicle stimulating hormone) levels, low AMH (anti-mullerian hormone) levels, unexpected low egg numbers, poor egg quality, or recurrent miscarriages.  These symptoms alone may be an indicator of Silent Endometriosis.  His office also finds many women with Silent Endo suffer from immune related issues, such as pelvic inflammation and elevated NK activity (NK cells are immune cells known as Natural Killer cells, and when elevated may show a heightened autoimmune response).  Dr. Tamer Seckin, one of the leading Endometriosis experts in the country, later blogged about Dr. Braverman’s efforts to shed light on infertility and Silent Endometriosis.

Dr. Braverman again addressed these topics in 2014 with the Endometriosis Foundation of America.  You can read the transcript and watch the video here.  He stresses again that most women that they see end up having Silent Endometriosis, but the first signs of the diagnosis is infertility, recurrent miscarriages, or pregnancy complications; NOT pain.  And that many are able to conceive after having their Endometriosis surgically removed.

On the flip side, a study published in 1987 in the British Medical Journal found no direct link between Endometriosis and infertility.  Women with Endometriosis were treated prior to attempts to conceive; however, they “did not return to normal fertility, though all other causes of infertility were excluded.”  They therefore questioned the disease’s role or contributions to infertility.

A study published in 2015 in the Journal of Psychosomatic Obstetrics & Gynecology found that women who suffer Endometriosis pain, as opposed to those without painful symptoms, have a poorer quality of life and mental state of being.  Is it saying that asymptomatic Endo sufferers don’t suffer? No.  It simply points out that pelvic pain can make a drastic difference, as well as recommends the possibility of psychological intervention for those in pain.  I’m sure anyone living with Silent Endometriosis must feel some sort of anxiety or grief at this invasive disease in their body, even if they may not feel physical pain.

As if this wasn’t enough to process, there is a case published in 2015 of a woman who had a lump in her belly button.  Sound familiar?  We have previously written about belly button Endometriosis (click here) where the bump bled, caused pain, grew, etc., especially during periods.  Well, this gal had no symptoms of Endometriosis, but had developed a bump inside her belly button which she carried around for 18 months before having it surgically removed.   Her little bump never bled or changed during her periods.  She had no prior diagnosis of Endometriosis.  Her doctors thought it was a keloid scar or maybe a fibroid in her skin.  So they cut it out and sent it off for biopsy: and it came back as umbilical Endometriosis.  She was referred to a gynecologist for treatment.  And the study doesn’t follow-up with her progress…

The medical community does not know why some women suffer with Endometriosis pain, while others may not know they have it.  It’s been suggested that those with Silent Endometriosis simply have a higher pain tolerance than others.  Although I know you women are strong and badass, I don’t know if I buy this theory.

Tanya’s Story & Symptoms of Silent Endometriosis

I asked Tanya if she could share with us her symptoms and diagnosis of Silent Endometriosis. Graciously, she agreed:

“1. I have had right side pain in the area of my ovary since my early 20s (I’m 38 now). I’d been to several doctors and they did ultrasounds, etc. and ultimately said it was nothing. The pain was not based on my cycle like most Endo pain is — it was pretty much always there. After I got the lap, I found out I had Endo on my right ovary, so that’s what that pain was all along.

“2. I frequently got what I thought were UTIs, but when I would get tested they always told me it wasn’t a UTI. I also had to pee all the time, and I had trouble fully emptying my bladder. The biggest concentration of my Endo was on my bladder.

“3. I had bright red spotting up to a week before my period. My fertility doctors always passed it off as low progesterone (without actually testing my progesterone). But really it turned out that I had Endo on my cervix and that’s what was causing my bleeding.

“4. Infertility. Also, poor egg quality and low ovarian reserve, despite my AMH and FSH (tests for ovarian reserve and egg quality) being normal.

“But I had none of the classic symptoms. I am lucky I found out. My half sister also had Silent Endometriosis and went through IVF and infertility, so it was in the back of my mind for a while. However, I asked two different fertility specialists and my OB if they thought I might have Endo, and they all said absolutely not. I think because I didn’t have the classic symptoms. I finally went to a reproductive immunologist who specializes in Silent Endo and within 5 minutes of speaking to me for the first time he diagnosed me with probable Endo. I got the lap with his surgeon a couple of weeks later and they found Stage 3 Endo.

“So that is my story. I hope this helps. I really appreciate you researching this. Like I said, I was lucky I found out. I really had to fight to get a diagnosis. It makes me sad that many infertile women are likely suffering with this and have no idea.”

Diagnosing Silent Endometriosis

It may very well be that the only signs and symptoms of Silent Endometriosis are likely fertility issues and an official diagnosis is obtained by chance.  Most women learn of their Silent Endo while undergoing some sort of unrelated abdominal surgery.

If you would like to see a video of what Endometriosis implants look inside of a woman diagnosed with Silent Endometriosis, click here.  Warning : you’ll be looking at a person’s insides!  But, it looks just like normal Endometriosis implants.  That’s because, in fact, it IS.  The symptoms are different; that’s all.  Just look at Tanya.  She had some symptoms, and she wasn’t diagnosed for quite some time.  Her implants, although not causing her extreme pain, did disrupt her body enough to create noticeable issues for her.  And, remember, some women have no symptoms.  I’m sure many go their entire lives never suspecting…

In 2002, a study followed-up with women who were previously diagnosed with Silent Endometriosis.  Between 1986 and 1989, 39 women had surgeries to have their tubes tied (aka a tubal ligation).  During those surgeries, Endometriosis implants were observed, removed, biopsied, and they were official diagnosed with the disease.  They’d never had any prior complaints usually associated with this disease.  Most were diagnosed with “minimal Endometriosis,” which may be considered Stage I or Stage II Endo.  In 2001, the authors followed-up with these women to see how they had been feeling over the years.  Only 6% had reported any type of pelvic pain since their diagnosis.  The study concludes that there is very little risk that women with asymptomatic Endometriosis will ever develop or have worsening symptoms.

How Many Women Suffer from Silent Endometriosis?

A study published in 1991 evaluated 86 women, all of whom said they did not have any symptoms of Endometriosis.  All 86 underwent laparoscopic surgeries, and low and behold almost half of them did, in fact, have Endometriosis!  A whopping 45.3% of the women had “definitive evidence” of Endometriosis.

A 2010 study suggests that 20-25% of women with Endometriosis are asymptomatic (meaning they don’t have any symptoms).  Assuming these estimates are accurate,  and that 176 million women worldwide have Endometriosis…25% would mean that 44 million women have mild to no Endo symptoms! Think you’re alone in your Silent Endometriosis?  Think again! Millions of women are right there with you.

But this begs the question: how many women have it and don’t know it?  To quote the Mr. Owl of the old Tootsie Pop commercials, “The world may never know.”  We can only continue to educate each other, the masses, and the medical community of the potential signs of Silent Endometriosis.

Stages of Endometriosis and Levels of Pain

Going back to that 1991 study which examined 86 women for Endometriosis, 32.5% were diagnosed with Stage I, 9.3% had Stage II, 1.1% had Stage III, and 2.3% suffered from Stage IV Endometriosis.  And none of these women had suffered from any pain or other typical symptoms of Endometriosis.

It has often been said that the Stage of Endometriosis does not dictate the pain level, only the level of infiltration of the disease.  Someone diagnosed with Stage I Endometriosis (the least invasive Stage), may have the WORST pain; and someone with Stage IV (the most invasive Stage), may have minimal pain.

But why? It’s a conundrum.  Nobody knows. Perhaps one day they will better understand not only the cause of our disease and the course it takes, but also the differences in pain levels, Stage levels, and ultimately…a cure.

Treating Silent Endometriosis

Since most women suffering with Silent Endometriosis don’t suffer any pain, the treatments I’ve run across only discuss surgically removing the implants.  Some studies actually mentioned not treating it, even surgically, since there are no symptoms to be treated.  Sometimes the risks outweigh the benefits (anesthesia, adhesions, recovery, etc.).

However, alterations to diet and lifestyle may help keep the growths of Endo at bay whether you have Silent or regular Endometriosis – anything we can do to help our bodies fight the growth and recurrence of the implants should be done. Right? Right.

My Last Two Cents

I feel like I’ve raised more questions than answers, but am once again very grateful to our readers for bringing this topic to light.  I had no idea that Silent Endometriosis was a thing!  Not only am I flabbergasted by the sheer volume of women who may have it and not know it, but am heartbroken with the lack of attention and information available on this subject.  I hope this little blog entry brings peace and answers to some…

Yours, Lisa

Resources:

Braverman IVF & Reproductive Immunology – (Blog, Oct 2013) Silent Endometriosis a Significant Cause of “Unexplained” Embryo/Egg Quality Issues in Young Women

Dr. Seckin Endometriosis Care and Surgery – (Blog, April 2014) Endometriosis and Infertility

Endometriosis Foundation of America – (Video, 2014) Jeffrey Braverman, M.D.; Outsmarting Endometriosis

Fertility & Sterility – (Abstract, Oct. 2002) A Long-Term Follow-Up Study of Women with Asymptomatic Endometriosis Diagnosed Incidentally at Sterilization

Human Fertilisation & Embryology Authority – description of NK cells

Oxford Journals – (Article, March 2015) An Unusual Case of Asymptomatic Spontaneous Umbilical Endometriosis Treated with Skin-Sparing Excision

Taylor & Francis Online – (Abstract, Aug. 2015) Impact of Endometriosis on Quality of Life and Mental Health : Pelvic Pain Makes the Difference

U.S. National Library of Medicine – (Article, Aug. 2010) Endometriosis and Infertility

U.S. National Library of Medicine – (Abstract, July 1991) Prevalence of Endometriosis in Asymptomatic Women

U.S. National Library of Medicine – (Article, May 1987) Successful Treatment of Asymptomatic Endometriosis : Does it Benefit Infertile Women

http://humanrep.oxfordjournals.org/content/11/suppl_3/103.full.pdf

https://www.asrm.org/uploadedFiles/ASRM_Content/News_and_Publications/Practice_Guidelines/Educational_Bulletins/endometriosis_and_infertility(1).pdf

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Frozen Embryo Transfers & Endometriosis

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A lot of women have trouble becoming pregnant, whether or not they have Endometriosis.  The question has been raised : if you have Endometriosis and are undergoing frozen embryo transfer (FET), which treatment regimens and protocols have the highest successful pregnancy rate?

I myself have never considered IVF and had to do a bit of initial research on the differences between fresh and frozen embryos, IVF, etc.  I am so grateful an EndoSister asked this question; brought this struggle to my attention.  So if you already know about these, please bear with me as I learn.  Otherwise, skip passed these first few categories to the knitty gritty below 🙂

In vitro fertilization (IVF)

IVF is when eggs are collected from a woman’s ovaries, and are introduced to sperm in a laboratory (called insemination).  If an embryo develops from the egg+sperm concoction, it is then introduced into the woman’s womb.  If the wee embryo accepts this new home, a normal pregnancy can be achieved.

Usually, women take medications prior to the IVF harvesting to boost their egg production. These fertility drugs may increase the chances of one, or many, of the eggs “taking” to the IVF procedures, successfully producing an embryo.  The multitude of eggs harvested for the IVF procedure may be used at that time or frozen for later attempts.

Some women opt to have multiple embryos placed into their womb at once, again to increase their chances of at least one of the embryos developing into a healthy baby.  This can lead to multiple births, including twins, triplets…or even octuplets.   Others have their unused harvested eggs frozen to be used, or donated, at a later time.

Although it sounds simple enough, IVF is anything but.  It is not only costly financially, but emotionally.  There could be constant tests (both in facility and at home), the depression of procedures not working, the sorrow of losing an embryo during development, miscarriages, still births, failed insemination attempts, side effects of medications, the constant wondering “what if” and “when.”  It takes a resilient heart.  And plenty of women and couples endure.  And many have successful births…yet, many do not.

Fresh embryo transfers

Fresh embryos are just that : fresh; not frozen.  Eggs are harvested from the ovaries, and the clinics inseminate the eggs.  Once fertilization takes place, embryos begin to form.  Two to three days later, the woman is back in the clinic having the embryos transferred to her uterus (through a small tube device inserted through the vagina and cervix).  Timing is critical, as there literally is no time to waste.  And if conditions aren’t *just right*, the transfer may not take.

Frozen embryo transfers (FET)

Much like fresh embryos, the eggs are harvested, inseminated, and fertilized.  The resulting embryos are frozen for later use, although some may not survive the thawing process.  The longest-frozen embryo, with a successful birth, was a 20-year-old frozen embryo! Twenty years!  The mother was a proud 42-year-old woman!

Over the years, the processes have changed for freezing eggs and embryos.  Now the preferred method is vitrification.  Vitrifi-what-tion? A very, very, VERY fast way of freezing.  Consider it like flash-freezing a bag of peas.  Fast, effective, and preserves quality.  Vitrification now allows for a thaw survival rate of greater than 95%!  Amazing, considering in the past using the slow-freeze method, a lot of eggs and embryos were lost during the thaw.

Studies have indicated that frozen embryo transfers yield a higher success rate than fresh transfers, boasting up to a two-thirds increase in successful pregnancies.  Why?  Theories have to do with fertility medications stripping the lining of the uterus from it’s cushiony-goodness (endometrial lining), creating a suboptimal home for the embryo.  Fresh transfers don’t offer a lot of time to optimize the uterus, and the women are still recovering from their recent egg harvest (their bodies may be stressed, bloated, or in pain still).  Meanwhile conditions can be timed (allowing the lining to rejuvinate, the woman to heal) with frozen-then-thawed transfers.  There is far more control in the hands of the doctors and women.

Endometriosis and infertility

It is widely accepted as common knowledge that Endometriosis can cause  infertility; however, it may not be well-known how or why it does so.  They say 30%-50% of women with Endometriosis struggle with infertility.  It may affect egg and embryo quality, or weaken uterine lining for implantation of the egg,  or the inflammation and immune system responses may breed a less-than-optimum fertile environment in the body, or the scar tissue or implants may lead to blocked/twisted/damaged ovaries or Fallopian tubes, or it may just lead to a greater chance of miscarriages.  Dr. Glatstein of IVF New England explains how Endometriosis may interfere with fertility in a short video here.

Endometriosis and IVF

The Society for Assisted Reproductive Technology (SART) released figures from 2013 of IVF procedures performed in women with Endometriosis, and the success rates of a live birth.

Using thawed embryos (aka once frozen…), the following percentages of live births were achieved in women with Endometriosis:

  • Women younger than 35 years old : 42.3% (out of 823 cycles)
  • Women between 35-37 years old : 39.8% (out of 414 cycles)
  • Women between 38-40 years old : 38.1% (out of 227 cycles)
  • Women between 41-42 years old : 29.8% (out of 48 cycles)

For comparison, IVF using fresh embryos in women with Endometriosis were :

  • Women younger than 35 years old : 42.0% (out of 1,818 cycles)
  • Women between 35-37 years old : 29.8% (out of 721 cycles)
  • Women between 38-40 years old : 21.1% (out of 427 cycles)
  • Women between 41-42 years old : 14.7% (out of 116 cycles)

Unfortunately, I do not know the Stages of Endometriosis with any of these women, nor their pre-IVF treatment for their Endo.

While some doctors believe in laparoscopic surgeries prior to IVF treatments to increase the chances of a successful procedures, others do not share those beliefs.  Studies exist which support both ideas : endometriosis does (and does not) affect IVF outcomes…Just as our disease is a great big gray area, so is IVF and Endo…Other studies have shown that the removal of endometriomas from the ovaries may reduce ovarian reserve and hinder the efforts of egg retrieval for IVF.  If you would like to consider surgery prior to IVF treatments, please have a few long discussions with your doctor about the potential influence with IVF procedures.

Studies & Things

In 2005, a study examined the differences of successful pregnancies and live births in women with Stage I & II Endometriosis versus women with Stage III & IV Endometriosis.  Ninety-eight (98) women with confirmed Endometriosis underwent IVF between 1996-2003.  Each cycle using frozen embryo transfers had higher success rates than those without.  It also found that women with Stage I & II Endometriosis were more likely to have successful IVF procedures, but women with Stage III & IV had less successful chances.  “Stage III/IV endometriosis means a worse prognosis for IVF/ICSI treatments compared to milder stages or tubal factors.” The authors suggested implanting two embryos in women with Stage III or IV, to increase the chances of a successful live birth.

In 2011, an Indian woman was the first successful pregnancy in Pune, India having used FET.  Her eggs were harvested on one day, fertilized the next day, the embryos were frozen, and implanted five months later.  At the time the article was written, she was successfully pregnant in her first trimester.

In 2011, a study was performed by reviewing scientific and medical literature to find out if using fresh or frozen embryos in IVF protocols increased the chances of live births in women with Endometriosis.  They reviewed the figures for women from 2000 to 2008, and 415 women had Endometriosis (representing 5.7% of the women in the entire literature review).  Their review found that there was no statistical differences between women with Endo and women without Endo using fresh embryos for IVF (as far as the chances of clinical pregnancy rates, live births, or  miscarriages).  However, they did find that when using frozen embryos (FET) with Endometriosis sufferers, the clinical pregnancy rate was much higher (18.2%).  This study suggested that women with Endometriosis should treat with GnRH antagonists (i.e, Lupron Depot), to help “better the environment” for the embryo, hopefully increasing the chances of a pregnancy and successful live birth.

Another 2011 study followed 29 women with Endometriosis who had multiple prior failed IVF attempts.  Of the 29 women, all underwent new laparoscopic surgeries to clear their bodies of Endometriosis and adhesions.  Twenty-two of them conceived after their surgeries; 15 naturally and 7 using IVF procedures.  The authors suggest laparoscopy may be a valid treatment option for Endo sufferers seeking to conceive and that the Stage of severity of Endo may affect the outcome of the pregnancies:

  • Of the four women with Stage I Endometriosis, 100% of them conceived;
  • Of the six women with Stage II, 83% conceived;
  • Of the six women with Stage III Endo, 83% conceived; and,
  • Of the 13 women with Stage IV Endo, 62% conceived.

An article published in April 2013 by Dr. Ryan Funk shared a story of a woman with Endometriosis who added acupuncture to her pre-IVF routine.  Previously, she had a laparoscopic surgery to excise the Endometriosis, had one Fallopian tube removed, and has unsuccessfully undergone five fresh embryo transfers and two frozen embryo transfers.  After a consultation with Acubalance Wellness Centre, she decided that two months prior to her FET procedure, she would start acupuncture, as well as dietary and supplement changes according to their recommendations.   For those two months, she attended weekly acupuncture sessions and noticed a difference in her periods and pain.  Because of those differences, she decided to postpone her FET procedure and continue acupuncture and her new dietary/supplement/herbal lifestyle.  Two months later, while keeping up with her new routine, she became pregnant.  Naturally.

A July 2013 study reviewed the data and studies of 8,984 women, analyzing their Endometriosis stages and infertility treatments.  The 13-page study  concluded that women suffering from Stage III and IV Endometriosis had poorer implantation and pregnancy rates than those with Stage I and II in IVF treatments.  Interestingly enough, the authors concluded the study by stating, “A demonstration of reduction of IVF clinical pregnancies in women with Stage III/IV endometriosis does not necessarily mean that treatment of endometriosis will restore the clinical pregnancy rates to the level expected in women without Endometriosis.  Therefore this evidence does not justify advocating medical or surgical treatment of Endometriosis for these women, as a favourable risk benefit analysis of intervention in this clinical context is currently absent.”

At a 2013 Medical Conference (put on by the Endometriosis Foundation of America), Dr. Jamie Grifo spoke about the importance of conducting pre-implantation genetic diagnoses on potential embryos to help achieve more successful pregnancies.  Dr. Grifo said, “Biological clocks tick a little bit faster for women who have endometriosis,” and would like to see women with Endometriosis have their eggs frozen earlier for optimum fertility.  He ends his speech with these very powerful words, “Egg freezing is an option to preserve fertility. It is a hope, it is not a promise. It is an option, not an obligation. Not something people should do but something that people should know about. It is very costly, it is not 100 percent…Give patients informed consent. Let patients make the decisions, let them know their options and let them make decisions. Do not let someone to make decisions for you…”  You can watch the video and read the transcript here.

A 2014 study found that women who received acupuncture prior to their FET procedures had higher rates of embryo implantation, clinical pregnancy and live birth than women who did not receive acupuncture.  The acupuncture was shown to also improve the pattern condition and blood supply of the endometrial lining.  It also “improved HOXA10 expression. Higher HOXA10 is associated with greater endometrial receptivity and good pregnancy outcomes. HOXA10 expression is lower in the uteri of women with hydrosalpinx, PCOS, and endometriosis.”  What’s HOXA10 (I had to look it up, too…) : it’s a protein gene. Sciencey stuff…But how much acupuncture did these women in this study receive?  They underwent six sessions per cycle for three cycles (so, doing that math that’s about six times a month for three months).

Dr. Lim wrote in her 2015 blog about a study that found that women who incorporated acupuncture into the lives and IVF treatments has a 91%  increased chance of a live birth as opposed to women who did not receive acupuncture.  The study concluded that “Acupuncture given with embryo transfer, improves rates of pregnancy and live birth in women who are undergoing in vitro fertilisation.”

What Other EndoSisters are Saying

An article published in 2009 follows the story of “Maria,” and her attempts to conceive.  She and her husband gave up drinking and consulted with a nutritionist.  She underwent monitored cycles, including regularly-scheduled scans and blood tests.  She also used a daily inhaler, which suppressed all hormones, as well as injections to accelerate egg production (she notes these injections caused her Endo to flare up…).  After having her eggs harvested, three days later she returned to have the embryos transferred, and she learned two weeks later that she was pregnant.  Another three weeks passed before she learned they were having twins!  When she had her eggs initially harvested, they had them frozen.  When she and her husband decided it was time to “try again,” she contacted the center to schedule a transferring procedure for the remaining embryos.  She was devastated to learn that all six embryos did not survive.  They pressed forward and scheduled an IVF procedure for later that month, and once again conceived twins.  She offers this bit of advice, “Results can be skewed by all sorts of things, so go and talk to the doctor yourself. Take their advice: if it means sacrifices like not drinking for a few months to increase your chances, just do it.”

In 2012, “9ay” asked Dr. Fiona McCulloch what could be done naturally to help increase her chances of a keeping her Endo at bay and achieve a successful IVF pregnancy.  9ay was diagnosed with Stage IV Endometriosis and had undergone excision surgery four months prior.  Since, she had tried to conceive naturally and by fresh embryo IVF, but failed.  To aid in her IVF journey, she was taking Lupron to down regulate, and was also taking Estradiol Valerate tablets to increase her endometrial thickness.  Dr. McCulloch responded that she has had several Stage IV Endo patients achieve successful IVF pregnancies.  She suggested taking EGCG tablets (from green tea) to fight inflammation and cut out gluten to help avoid any immunological issues it may create.  She additionally suggested undergoing allergy tests for additional Endo triggers, as well as a complete thyroid panel to check for thyroid antibodies.

In 2012, Sarah wrote about her IVF journey on Bloggers for Hope.  A few years after her first excision surgery, Sarah and her husband decided it was time to try to make a family.  She stopped her birth control pills and immediately suffered horrible periods and pain.  A few months later, she endured yet another surgery to remove her Endo implants and adhesions.  She and her husband tried to conceive naturally for a few moths, but to no avail.  She took Clomid and underwent three separate IUIs (a procedure where sperm is injected directly into the uterus during ovulation).  When those did not work, they put her on Lupron for a month (to regulate her estrogen levels), followed by an IVF cycle.  She was also on Folostrum at that time.  Her doctors retrieved 23 eggs, inseminated 19 of them, froze a few, and transferred two of them five days later.  *voila* Henry was conceived.  Later, when they decided it was time to try again, they thawed the remaining six frozen embryos.  Two did not survive the thaw, and the other four were transferred during two separate FET sessions; each procedure failing.  Sarah writes, “After the final FET we knew we were done.  Both financially and emotionally we were at our limits.  We decided to walk away and hold on to how lucky we are to have our sweet Henry.”

In July 2013, “luv01314” posted in a forum that she has Stage IV Endometriosis, along with Adenomyosis.  She had previous failed attempts at fresh IVF, a laparoscopic excision surgery in April 2013,  as well as naturally trying to conceive for two months, without success.  She was going to try FET next.  Many women responded with their own stories (some successful, others not).  The difference? It all depends.  On what? On the woman, the method of freezing, the odds, Luck, God’s will, the Fates, etc.  There really is no way of knowing.  Some women used Lupron or birth control pills to prep for the IVF; others did not. One woman was quoted a 98% success rate for FETs, yet her child died in a miscarriage.  There is no guarantee.

In 2013, an Anonymous EndoSister was able to conceive after her fourth fresh IVF treatment.  She had some frozen embryos to try again later, once their son was a bit older.  Her question was how long can she wait before her Endo (and age) became a damning factor in IVF procedures.  Sisters offered advice of her trying to get another laparoscopic surgery before attempting FET procedures (to clean out her body and give those embryos a fighting chance).  Others suggested a three-month course of Lupron Depot prior to the FETs.  And yet others recommended both the laparoscopy and the three-months of Lupron Depot prior to trying the FET procedures.  I don’t know what course, if any, she chose.

Did I Answer the Question?

I’m not quite sure I did.  It seems each IVF (whether fresh or frozen) experience was an individual experience, none in common with the other.  It depends on sooo many factors, but what I did find is:

  1. If preparing for an IVF procedure, take care of your body.  Attempt to reduce your Endometriosis (and inflammation) with diet or supplements (always discuss with your doctor first).  Try to give your body the best fighting chance it has to not only be healthy, but to create a warm and welcoming home for your child.
  2. Consider acupuncture prior to IVF.  Studies have shown it may help increase your chances of conception.
  3. Perhaps talk to a nutritionist.  What food triggers your Endo symptoms?  What food calms your symptoms?  What food may be best to facilitate the IVF and health of your body, and the health of your child?
  4. The Stage of Endometriosis may affect the outcome of IVF treatments, and the use of more embryos during IVF may be warranted.
  5. Fertility drugs, hormones, and GnRH antagonists may be a viable regimen prior to harvesting eggs and implanting embryos.  Many women have taken them and had successful IVF procedures.  Then again, many have not.
  6. Talk to your doctor.  Not only about your fears and questions, but about your desires.  Discuss alternatives to medication you may not wish to take.  Ask for candid answers regarding percentages and best-case/worst-case scenarios.  Be informed.
  7. Techniques for freezing, and thawing, eggs and embryos has changed over the decades and has a far greater success rate than in the past.
  8. And most importantly : you are not alone in this struggle.  You have friends and family, as well as the countless other women who have endured (and are enduring) the same thing.  Seek out support groups or online forums.  Find that camaraderie, those shoulders to lean on, the advice of those who have been there.

What will be, will be.  Wishing all of you the best of luck in your efforts to create a family.  I gave up long ago, and am at peace with that decision (although sometimes it still stings).  May you have the strength to endure.

Yours, Lisa

Resources:

Acubalance Wellness Centre – (Article, April 2013) Endometriosis Pregnancy Success : A Case Study

Advanced Fertility Center of Chicago – IVF & Lupron

American Society for Reproductive Medicine – Endo and infertility

Babycentre – “luv01314” Q&A forum

BJOG – (Article, July 2013) The Effect of Endometriosis on In Vitro Fertilisation Outcome : A Systematic Review and Meta-Analysis

Bloggers for Hope – Sarah’s story of infertility and Endometriosis

Chances Our – blog with notes from Endometriosis Conference 2013

CNY Fertility – Vitrification for Embryos and Eggs

DC Urban Moms and Dads – Anonymous Endo Sufferer’s IVF Journey

Dominion Fertility – Do I Need Endometriosis Surgery if I am Planning to Pursue IVF

DrG’s Fertility Blog – Do I Need Endometriosis Surgery if I am Planning to Pursue IVF

Dr. Helena Lim – The Benefits of Acupuncture in IVF

Endometriosis Foundation of America – 2013 Medical Conference Video and Transcript of Dr. Jamie Grifo, “Egg Freezing as an Option for Endometriosis Patients”

Fertility AuthorityInfertility Research Shows Frozen Embryo Transfers Yield Higher Pregnancy Rates

Fertility Centers of New England – IVF is a Very Good Treatment for Infertile Women with Endometriosis

Human Fertilisation & Embryology Authority – Embryo Transfer

Human Fertilisation & Embryology Authority – Maria’s IVF success story

Information Acupuncture Infertility Research – (Abstract, 2014) Acupuncture Improves Receptivity of Endometrial Lining in IVF Frozen Embryo Transfer

IVF1 – Endometriosis IVF

IVF.ca – “9ay” Q&A with Dr. Fiona McCulloch

IVF New England – 2014 Video of Dr. Glatstein explaining how Endometriosis can interfere with fertility

Medline Plus – IVF

OBGyn.net – (Article, June 2011) Laparoscopic Treatment of Endometriosis in Patients with Failed In Vitro Fertilization Cycles

Oxford Journals – (Article, May 2005) Effect of Endometriosis on IVF/ICSI Outcome : Stage III/IV Endometriosis Worsens Cumulative Pregnancy and Live-Born Rates

Shady Grove Fertility – IVF : What You Need to Know

Society for Assisted Reproductive Technology – stats re IVF and FET

The Infertility Center of St. LouisBaby Born from 20-Year-Old Frozen Embryo

The Times of India – (Article, Nov. 2011) Woman Conceives Successfully Through ‘Frozen Eggs” Technique

US National Library of Medicine – (Abstract, June 2011) Live birth rate in fresh and frozen embryo transfer cycles in women with Endometriosis

Victoria Fertility Centre – Frequently Asked Questions

Vitrolife – vitrification explanation

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

What would you like to know?

causes

Have a question about Endometriosis?  Or treatments, surgeries, medications, side effects, symptoms, quality of life, etc.?  Drop me a comment below or an email.  I’ll do some research and write about it 🙂

Don’t want to leave your question in the comments? Email me at lisa@bloominuterus.com.  I can share your name, or leave it anonymous (you choose).

Looking forward to hearing from you!  Yes, YOU!

🙂

Lisa

Feel Good Fridays

We made it through another week.  Yes, YOU made it through another week.

Today’s quote is from Dr. Jamie Weisman.  A simple, uplifting quote, especially if you have (or someone you know has) a chronic illness:

“Most people live in fear of some terrible event changing their lives, the death of a loved one or a serious illness. For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You survive. You adapt, and your life changes, but in the end you go on, with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living.”

These same words are true for everyone, whether they have a chronic illness or not.  This “amazing secret” can be applied to any circumstance in life that you may be going through.  Pull through.  Speak with friends.  Ask for help.  You will endure.

Have a wonderful weekend.

Yours, Lisa

This Sunday, Nov 15, in British Columbia

Jenni Rempel will be hosting an event to shed some light on invisible illnesses, including her own – Endometriosis.  Funds raised from this event will help pay for her excision surgery.

Are you near the Maple-Ridge area? Know someone who is? Want to go?

“Shining the Spotlight: A Benefit to Illuminate Invisible Illness” will take place at Theatre in the Country (9975 272th St.) this Sunday, Nov. 15 starting at 2 p.m.  This will be an afternoon of entertainment/performances with a silent auction and bake sale. View the Facebook event for more info: https://www.facebook.com/events/684114358355419/

More information can be found here: http://www.mrtimes.com/community/344836422.html 

The Endometriosis Foundation of America’s Donor Spotlight

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Today we had the honor of being featured in the Endometriosis Foundation of America’s Donor Spotlight!  We have enjoyed our interactions and communications with the EFA so much over this past year.  And being able to raise funds for their efforts.  They’re a huge organization, yet speak to us “little people” with such support and respect it’s incredible.  And now this?  We’re overwhelmed!

If you’d like to read our little interview, feel free to click here

We will continue to do great things together.  All of us.

Yours,

Lisa

Happy Blogiversary!

blogiversary

One year ago today, I started this little blog.  Just wanted to get my thoughts and feelings out, have a place to post my research and share fundraisers, and am amazed at what it’s blossomed into!

Thank you, Readers, for helping me make this site into a Home.  A place where people can come for help.  For support.  For each other.  And thank you for your Reader’s Choice topics.  Together, we continue to learn more about this disease and understand that we do not face this alone.

If there is every anything you’d like me to write about, please contact me or drop a comment below.  I am here for you.  Just as you are here for me.

Thank you for an incredible year!

Love, Lisa